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Advocacy Mondays with Judy Krasna

Trust me, I never set out to be a parent advocate. After I started
helping other parents find treatment for their children, I came to realize that
my own frustrating treatment experience was the norm and not the exception. I
became extremely frustrated at the lack of effective treatment here in Israel
and at how parents were either marginalized or blamed altogether; and at some
point, almost as a knee jerk reaction, I threw my hat in the ring as a parent
advocate. I do not want any parent to feel as helpless and as scared as I was,
and I don’t want to accept the current treatment situation as “the best that we
can do”. There is better, and I am working to try and get better eating
disorder treatment for Israeli patients and families.

2. What does your advocacy work consist of/how do you define advocacy?

To me, advocacy is about supporting people who need help and trying to
promote change by fixing faulty or broken systems. Here in Israel, I am working with the Israeli Association for Eating
Disorders to try and show them how parents can offer them perspective and
experience that is beneficial and valuable when it comes to improving patient
care. I am also trying to influence decisions that affect eating disorder
treatment across the country.

I write a blog that talks about my daughter’s anorexia from my vantage
point as a mom because I want to send the message that it’s okay to talk about
eating disorders, they shouldn’t be stigmatized or swept under the rug. I also
want to bring forth a better understanding of eating disorders and those who
suffer with them.

I work one on one with parents, giving them guidance on where to find
the best treatment and eating disorder resources, how to avoid pitfalls, and
trying to empower them to whatever degree I can. I have a lending library of
great books on eating disorders that I have bought over the years for the
purpose of reading them and then passing them on to others. The more
knowledgeable we are as parents, the more empowered we are to help our
children.

On a more global level, I am a co-chair of the Academy for Eating
Disorders’ Patient-Carer Committee (along with F.E.A.S.T’s own Leah Dean). This
is an exciting new opportunity for patients and parents to raise our profile
within the AED and to allow for the exchange of ideas between parents,
clinicians and researchers. We are working on getting eating disorder
resources/information to the people who need it, on improving medical care
standards, and on other worthwhile projects which have the potential to benefit
the parent community.

3. What change do you hope to affect?

I hope to make parents feel less scared and less alone, and I want
them to have access to the best possible treatment for their child. To this
end, I am trying to build a treatment database of both public and private
treatment options in Israel. I am trying to push Israeli treatment centers to
start using FBT, because some of the methods that are used here are not
evidence based and have the potential to do more harm than good. I hope to make
clinicians see that parents who have a loving, healthy relationship with their
child should be pulled closer in treatment and not pushed away, and that we
parents have perspective and knowledge that can help them improve patient care.

4. What are some of the challenges/frustrations inherent to this type
of advocacy?

In Israel, we are more or less two moms fighting an entire
professional community in a fervent desire to affect desperately needed change.
Too many people aren’t getting treatment at all, or they are getting
ineffectual treatment. Too many people are falling through the cracks. The
professional community has many collective years of experience, and I am just a
mom who is not even a native Hebrew speaker trying to tell them that in my non-
professional opinion, some of the methods, practices, and systems that they are
using are outdated or not getting the job done well enough. Who am I to tell
them this? Especially when many of these professionals view parents as the root
cause of our child’s eating disorder and already consider us to be public enemy
#1. Under these circumstances, it’s hard to advocate for better treatment, but
we do it anyway.

On the public front, everyone seems to believe that the thin ideal and
the media is causing eating disorders and no one is all that interested in
hearing that science is proving otherwise. So educating people about anorexia
is especially hard because first you have to wipe out their preconceived
notions.

5. Top 5 things you would share with a family facing a new diagnosis?

1.Don’t choose the least expensive treatment or
the most convenient treatment, choose the best treatment. You only get one shot
at treating an eating disorder while it’s still in the initial stage, make it
count even if it strains your bank account or keeps you in the car for hours
every day.

2.Recruit whatever help you will need to get
through the next few months. Lean on your family and friends, get people to
send in dinner or cover your carpools or take your other kids to a movie or do
whatever it is that you no longer have the time to do. There is no shame in
asking for help. If someone who you love needed you, you would be there for
them. Now is the time to let them be there for you.

3.EDucate yourself. Knowledge is power. You
have to know what you are fighting against so learn everything you can about
your child’s eating disorder and how you can help him/her beat it. Check out
the resources section of the F.E.A.S.T website.

4.Join online parent forums. Around the Dinner
Table was a lifesaver to me. Friends and family are great, but there is nothing
like the support that you get from someone who has walked a mile in your shoes
and who truly understands what you are going through. The practical advice that
other parents offer is truly invaluable.

5.Use your instincts. If you have doubts about
the efficacy of your child’s treatment or about the methods that they are using,
ask questions. If you don’t like the answers, consider making a change. I wish
that I had followed my instincts, which were screaming at me that the place
where my daughter was being treated was only making her eating disorder worse.
By the time we pulled her out, so much damage had been done.

Most of all, hang in there. Things are going to get worse before they get
better, but they WILL get better.

Judy Krasna, originally from the US, currently lives in Israel with her husband, her 22 year old triplet daughters, and her 13 year old son. She is a party planner who helps people from abroad celebrate their life cycle events in Israel.

When one of her daughters developed anorexia, Judy and her husband were forced to navigate the treatment system in Israel alone and without support. Judy became a parent advocate, helping other parents find treatment for their children and offering them advice based on her own experience. A few years ago, Judy began a blog on Times of Israel on the topic of her daughter's anorexia http://blogs.timesofisrael.com/author/judy-krasna/ and more recently, Judy began working with the Israeli Association for Eating Disorders as a parent consultant. She is a co-chair of the Academy for Eating Disorder's Patient Carer Committee.

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